Monday, June 28, 2010

Throwing up

Jude is still throwing up violently. If he doesn't stop by the morning, he is going to the ER. Mike, and the nurse will be taking Jude in the morning. He is also still having dark stools which are a serious concern to me. There is no way it takes four days to get 1 bottle of chocolate pediasure out of his system, when he has had SEVERAL dirty diapers. We gave him some natural medication tonight to replace the good bacteria in his system. We went through this issue with the CDIF, but Jude seems a lot more alert than the last time we found ourselves in the hospital. I guess that is why I feel okay with waiting until the morning.

I am also going to call Emily's old pediatrician tomorrow to see what his thoughts are regarding taking Jude as a patient. I love Jude's pediatrician, but I think he feels held captive by a hospital that is very limited. He cannot just send Jude "over" to the ER if he feels it's warranted. He also never orders bloods levels, sonograms, swallow tests, etc. I feel like Emily's pediatrician might be more experienced in this level of care. He does work for the Cook's network so this may help. He is the one that caught Emily had a water born parasite from swim school when every other well educated doctor were at a loss. I am also concerned Jude's pediatrician was one of the people that contributed to the loss of his nurse. Luckily they ruled in our favor, and I actually ENJOYED reading the verdict tonight in detail. The hearing results came in the mail, and it was very lengthy. The officer seemed rather miffed that they signed off on the fact the "parents" could be skilfully taught to manage Jude's medical issues. The hearing officer said "well they need a skilled nurse to teach them these things", and labeled Jude's condition fragile, and able to change sporadically. We have 60 days of an approved nurse, and I PRAY we don't have to go through a heavy qualification.

So I texted my boss tonight, and explained if Jude goes in to the ER, then I must get Emily to the dentist by 2:30. I will have no one to take her, and we already cancelled once because of Jude's vomiting. I also explained if it's serious I had to leave. It's strange how when you have a medically dependent child you manipulate your schedule like a well oiled machine with work, and home. It just has to be done. The way you shift your priorities has to be carefully thought through.

I think this is either some serious teething with additional issues created by the prior phenobarbital use (causes hardened gums). This could also be a medication issue, a virus, or again the small tear in the esophagus. It's strange how we become so educated in possible diagnoses.


Jamie said...

I am so sorry Jude (and you and Mike)are having such a rough time. There is a terrible stomach virus going around right now too but you are so right- the stools are concerning! I am not sure exactly where you are but I know you have mentioned going to Denton for appointments before. We use Dr. David Goff for Anna's pedi and he is in the Cook's system. He is fabulous and has really been able to help us get what we need. It is also nice because the Specialty Clinics are there in Denton too. I will say an extra prayer for Jude tonight that he will get well and not need the ER!

sarah said...

you have probably already looked into this... another fragile child whose blog I read has chronic pseudomonas. When she seems to be having a lot of pain, they treat her with Elavil for a while. It could be possible that Jude is in pain from something, and the pain is causing the seizures (another thing the other child does) and lack of appetite. Could he possibly have developed a food allergy that caused this cycle of pain and seizures?

Purple Quilter Queen said...

I'm praying for you Jenn! Hope Jude is feeling better. Take care!